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Charlie & dad; UK court ruling today confirms hospital removal of life-support

A second court has now doomed 9-months-old Charlie Gard to die inside a London hospital.

The UK Court of Appeal ruled this morning against the plea of parents Connie Yates and Chris Gard that they be allowed to take their failing son out of a British hospital for experimental treatment in the U.S.

The decision by Justices Andrew McFarlane, Eleanor King and Philip Sales affirmed a lower court ruling of April 11 that the Great Ormond Street Hospital (GOSH) keep Charlie on the premises and remove him from a ventilator and feeding tube.

As reported by The Guardian, the Appeal Court judges had been otherwise urged by Charlie’s lead attorney, Richard Gordon, that the case raised serious legal issues, including the possibility that Charlie might be being unlawfully detained and denied his right to liberty. Gordon argued, The Guardian reported, that,

“What is really at stake in this case is the state, on a massive scale, intruding in your right to private and family life.”

Charlie entered GOSH in October and was diagnosed as suffering from a form of mitochondrial disease that causes progressive muscle weakness and brain damage. Subsequently, his parents discovered that 18 people in the United States had been treated with an oral medication of naturally occurring compounds to remedy this rare condition. Reports have not identified the doctor who initially agreed to treat Charlie, but it was noted that his parents were aware that no cure was promised.

Attorney Gordon urged that the Appeal Court, “[S]hould not interfere with the exercising of parental rights… and stand in the way of their only remaining hope.”

Over 80,000 people around the world agreed with that position and generously pledged over $1.5 million in a GoFundMe campaign (#Charliesfight) to get him out of the hospital and into the experimental therapy.

GOSH attorneys pressed the Appeal Court to agree that the parents’ proposed treatment for Charlie would result in a “condition of existence which is offering the child no benefit.”

One can only sadly wonder, alternatively, what Charlie’s “condition” would have been if GOSH had released him—months ago– for the new therapy.

His parents never imagined that bringing their baby to a hospital meant they would lose the ability to remove him.  But that is what British courts have now decreed.

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Three UK Court of Appeal judges heard arguments today in the case of releasing a baby boy on life support to get experimental therapy in the United States. Justices Andrew McFarlane, Eleanor King and Philip Sales are expected to issue a ruling Thursday in a case reviewing a decision against the baby’s parents made April 11 by High Court Justice Nicholas Francis.

Imagine yourself in this drama, as the London parents, Connie Yates and Chris Gard.

After their son Charlie was born healthy in August, they brought him to the Great Ormond Street Hospital [GOSH] for care in October. After establishing a diagnosis of a rare and incurable disease, GOSH then prevents them from taking their failing son overseas for a “last chance” experimental treatment!

Parents stateside have watched a related development as Scott and Sheryl Crosier led a crusade to stop DNR orders from being placed on children without parental notice and consent. Their 3-months-old son, Simon, with Trisomy 18, was denied resuscitation and died. Multiple stories of medical bias against medically fragile children were presented to the Kansas legislature, which enacted Simon’s Law in April by resounding margins.

Britain has no such hospital decision-making protection for parents.

After Charlie’s parents tracked down a potential new therapy, they launched a GoFundMe campaign –in January– to raise funds for the expenses of taking their baby overseas, with this plea:

“We are running out of precious time with our baby, he can’t have this treatment in the UK so our only hope now is to get Charlie to America.”

Over 80,000 members of the public responded generously to pledge over $1.5 million to cover Charlie’s expenses… yet GOSH will not let Charlie leave the premises!

For months, Charlie’s parents pleaded that they did not think their son was in pain; insisting that “their fight was not them ‘being selfish’ in keeping Charlie alive but about exhausting all options for potential treatment.”

CHARLIE DETERIORATES
WHILE CONFINED IN LONDON
Today, according to various UK news reports, GOSH attorneys doubled down on their position, telling the Court of Appeal that Charlie “cannot see, hear, make a noise or move,” that it is “hard for anyone to know whether he is pain,” and that further treatment would leave him in a “condition of existence.”

In essence, the hospital asserts the parents are unreasonable to pursue a treatment, cannot tell if they are causing Charlie pain and there’s no “meaningful” reason for Charlie to stay alive.

It is now five months since the funding campaign was started by Charlie’s parents, desperate to get him to the U.S. to be involved in experimental “nucleoside bypass therapy.” They acknowledged it was a move that had limited scientific basis to repair Charlie’s mitochondrial depletion syndrome, but would assuredly aid in the research to help others in the future.

It is hard not to see that Charlie Gard’s deteriorating condition is due in no small part to the stubbornness of a hospital unjustly asserting control, and “usurping the parental function” in the words of the parents’ attorney today in Court.

Followers of Charlie’s saga scratch their heads and say why has the hospital insisted –against the parents’ wishes—that Charlie be removed from life support and “die with dignity?”

The Court of Appeal will have the final word Thursday.

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Sheryl Crosier and Gov. Brownback share a spontaneous hug after the official signing of Simon’s Law.

Appreciative parents, legislators and pro-life /pro-family advocates surrounded Kansas Gov. Sam Brownback this morning as he formally signed Simon’s Law.

Simon’s Law passed the Kansas Senate 29-9 on March 16 and the House by 121-3 on March 31. The victory culminated a grassroots campaign among families whose children with chromosomal disorders were denied life-saving care.

Simon’s Law is a very significant pro-life measure in the area of selectively “rationed” care and medical discrimination against children with life-limiting diagnoses. Simon’s Law:

  • validates both the medical advisory role and parental rights;
  • ends “secret” DNRs based on “quality of life” judgments;
  • buttresses dignity for children with disabilities;
  • exposes policies denying life-saving care; and
  • combats erosion of the Sanctity of Life ethic in our culture.

As catalogued in an award-winning 2014 short documentary, “Labeled,” a frightening number of children with chromosomal disorders are denied life-saving medical treatment.

Trisomy 18, Trisomy 13, and related genetic disorders have been routinely labeled “lethal” and “incompatible with life.” As a result, children with these conditions almost automatically receive DNR (Do Not Resuscitate) orders without parental consent.

That was the experience of Sheryl and Scott Crosier, who lost their infant son, Simon, six years ago.

Kansas pro-life legislators surround the Crosier family (left) as Gov. Brownback officially signs Simon’s Law with Frank & Ann Barnes at far right.

Simon had a diagnosis of Trisomy 18. At age three months, he had what proved to be a fatal apnea attack in the hospital.  While his parents held him, they waited in numbing shock as no emergency aid came to the rescue.

Later, Sheryl and Scott found that a DNR order was in Simon’s chart, which neither parent knew about nor approved.

After Simon’s death, Sheryl and Scott reviewed his chart and discovered Simon had only been given “comfort feeds” which are not sufficient for growth and development. He had also been given medications incompatible with his apnea. These revelations fueled their anger and their resolve to do something.

A LAW TO ALERT PARENTS
The Crosiers believed legislation was needed to

  1. stop the issuance of unilaterally-issued DNRs, and
  2. expose the practice of hospital futile care policies dictating scenarios in which life-saving treatment is withheld or withdrawn.

They began in Missouri in 2014, but certain medical interests were opposed and the measure has not yet been able to secure committee passage.

Kansans for Life  took up the original bill last year, and redrafted it with aid from NRLC’s Robert Powell Department for Medical Ethics. After an impressive win in the Kansas Senate, there was insufficient time for action in the House in the 2016 legislative session.

This year, the bill was refiled amid delicate negotiations between Kansans for Life  and hospital staff and hospital ethicists. The result was a more narrowly focused bill that was able to bridge entrenched medical objections.

The Crosiers approved the revisions and came to testify at the Statehouse with 12-year-old son Sean. The sadness and sense of betrayal of Simon’s death is still very real for them. Sean testified about how his excitement at being a “big brother” tuned into “pain and heartache” that still endures.

Parents of Trisomy kids rejoice in the signing of Simon’s Law

NATIONAL IMPACT
Frank and Ann Barnes from North Carolina also traveled to Topeka to celebrate the bill signing today. Their daughter Megan, was profiled last year in the NRLC News Today

Yes, Megan had limitations, but her mother described her as “content” and “knew she was loved.” At age nineteen, Megan was hospitalized for virus-caused dehydration, in a pediatric intensive care unit at a major teaching hospital. She was never to return home.

Due to her Trisomy 18 condition, a DNR had been verbally ordered into her chart by an “attending” physician without parental notice or consent. Megan was dead four days later.

Ann and Frank are actively involved with S.O.F.T., a nationwide family support group for Trisomy 13, Trisomy18, and related disorders. At today’s signing and press conference, Gov. Brownback invited them to talk about their daughter and the impact of her death.

As of July 1, Simon‘s Law in Kansas will mandate:

  1. Parents receive both written and verbal notification before a Do Not Resuscitate Order (DNR) is placed in a child’s medical file. Parents can then allow the order– or refuse it orally or in writing. Court access for disputes is delineated and the child remains safe during resolution.
  2. Parents and prospective patients of any age have the right to request and receive hospital policies concerning “denial of life-saving care” (sometimes referred to as medical futility policies). There is no mandate that hospitals have such policies.

See KFL Simon’s Law video here and more on the KFL youtube channel.

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The American College of Pediatricians has congratulated the Kansas legislature for the passage of Simon’s Law, “on behalf of our most vulnerable patients and their families.”

In a letter this week to Kansas Gov. Sam Brownback, the College’s president,  Dr. Michele A. Cretella, urged him to sign the first-in-the-nation bill, which is exactly what will happen Friday morning in a public ceremony in the Capitol at Topeka.

As a backdrop, she cites a Feb. 2014 article in the journal Pediatrics, for her assertion that, “Once inconceivable, the practice of hospital staff placing a do not resuscitate (DNR) order on a child’s chart without the informed consent of the child’s parents or legal guardian is on the rise.” (see more here)

Infant Simon Crosier with his brothers before his death by secret DNR

Dr. Cretella congratulates that, “Simon’s Law is designed to prevent this practice. It will guarantee parents their inalienable right to participate in the healthcare decisions of their children. The willingness of some physicians to circumvent the child’s and parent’s or guardian’s consent regarding disagreement over medical care is ethically concerning. This is because medical decision-making is increasingly predicated upon the ill-defined and subjective concept of ‘quality of life’.”

She continues, “While a life with one or more disabilities may be considered intolerable by some, there are many children and adults with one or more severe disabilities who believe otherwise, as do their families. A medical team of highly accomplished, able-bodied individuals that relies upon its subjective and imperfect prediction of a child’s potential quality of life in the future, as a basis for its decision-making, is likely to be biased against preserving the life of a disabled child. Allowing these medical teams to then force that biased view on a patients and his family via unilateral DNR, approaches the practice of euthanasia.”

This is the context of why Simon’s Law is a great step in reclaiming a cultural respect for the dignity of human life. Dr. Cretella explains,

“Simon’s Law acknowledges every human being’s inherent dignity and the fact that patients and their guardians– most especially parents of minors– have the right to know policies concerning the ‘denial of life-saving care’.”

Dr. Cretella

In conclusion, Dr. Cretella writes, “Moreover, the requirement that patients themselves and/or their parents or other legal guardian receive both written and verbal notification before a Do Not Resuscitate Order (DNR) is placed in a medical file respects the principles of beneficence, nonmaleficence, justice and autonomy.”

Kansans for Life appreciates the support for Simon’s Law from such a respected group… one that defines itself as designed “to promote a society in which all children, from the moment of their conception, are valued unselfishly.”

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Crosier family before Simon’s death

Kansans for Life’s top priority pro-life bill, Simon’s Law, has been sent to a receptive Gov. Sam Brownback for his signature.

Kudos goes to the tireless efforts of the Scott and Sheryl Crosier family for launching the grassroots campaign, in their infant son’s name, to enact a law which will save lives and solidify parental rights.

In final action Thursday, the Kansas House voted 121-3 in favor of Sub SB 85, Simon’s Law. The measure had already been approved 29-9 by the Senate two weeks ago, and requires:

  • Parents receive both written and verbal notification before a Do Not Resuscitate Order (DNR) is placed in a child’s medical file. Parents can then allow or refuse the order.
  • Parents and patients of any age, upon request, have the right to receive hospital policies concerning “denial of life-saving care” (sometimes referred to as medical futility policies). There is no mandate that hospitals have such policies.

Rep. John Whitmer (R-Wichita) carried Simon’s Law on the House floor with precision and in a heartfelt manner.  He recapped that Simon Crosier was a medically-fragile infant with Trisomy 18 whose death was caused by denial of resuscitation because a DNR was placed in his medical file –without his parents’ knowledge or consent.

Rep. Brim

Rep. Shelee Brim (R-Shawnee) was first up to speak in support of Sub SB 85 during House debate Wednesday. She referenced a close friend who had been urged to abort a child due to a “dire” diagnosis of anencephaly and spina bifida. Her friend refused and that ‘child’ is now twenty. In remarks committed to the House Journal, Rep. Brim said,

Little blessings like Simon may be on Earth for a matter of minutes, hours, or years. These vulnerable babies are not yet able to speak for themselves and I feel that their parents are their voices– NOT the doctors. We may not know the reason for the brevity of a baby’s life, but there is a reason. Simon’s life taught an important lesson and my hope is that we learn from this.”

Rep Dan Hawkins (R-Wichita), chairman of the House Health and Human Services Committee, commended the efforts to negotiate the final language with medical and disability experts and produce what is “not only a good bill, but a great one.”

Special thanks goes out to Representatives Kevin Jones (R-Wellsville) [see video] and Randy Powell (R-Olathe) [see video] who were the chief sponsors of the House bill, joining with 28 co-sponsors, including three practicing physicians. (See more Simon’s Law support videos here.)

Rep. Jacobs

Rep. Trevor Jacobs (R- Fort Scott) explained his vote in support of Simon’s Law,

I sincerely believe that one of government’s most essential and valuable responsibilities is to protect the life of its weakest and most vulnerable citizens, and that is the life of a child. In the Hebrew language, “Simon” means “to listen or to hear.” I have heard the cry for help and for justice [and] stand for the sanctity of life.”

Kansas stands alongside the Crosier family and other families who testified about victimization by medical discrimination and unilateral DNR placements. We hope other states are now encouraged to enact Simon’s Law.

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Simon Crosier & parents

The weather outside in the capital city of Kansas today was dreary and rainy, but a raft of sunshine could be felt under the capitol dome this morning when the Kansas House passed Simon’s Law with a unanimous voice vote.

Tomorrow,  in “final action,” the individualized vote tally will be recorded. Simon’s Law, Sub SB 85, already passed the Senate 29-9-2 March 16, and it will be heading for signing to a receptive Gov. Sam Brownback.

The importance of this measure for restoring dignity to, and protection for, medically marginalized infants and children should not be understated.

Testimonies in support of Simon’s Law came from numerous families whose children were treated disrespectfully and even denied life-sustaining care due to being “labeled” as “incompatible with life.”

The bill was named for Simon Crosier, whose parents have been conducting a grass roots campaign against the imposition of DNR (Do Not Resuscitate) orders without parental consent. His story was part of the introductory remarks given by the bill-carrier of Sub SB 85, Rep. John Whitmer (R-Wichita).

Rep. Whitmer

“Simon Crosier was born on September 7, 2010. On his 3rd day of life he was diagnosed with full Trisomy 18, a chromosomal disorder, and his life –and sadly the quality of his medical care and treatment– changed dramatically after that diagnosis. You see, many doctors declare Trisomy 18 as “incompatible with life,” despite evidence of the contrary and of course those who survive for months, years and even decades.

Simon drew his last strained breath at 10:45am on December 3rd, 2010. Imagine watching your child take his last breaths, his oxygen saturation levels plummeting and the medical professionals doing nothing to intervene. It wasn’t until AFTER Simon’s death that his parents discovered there was a Do Not Resuscitate (DNR) order in his medical file which explains why the medical professionals stood around and did nothing.

His parents did not know about, nor did they consent or even discuss this with ANY of the medical personnel prior to the execution of that DNR order. Passage of Senate bill 85 would prevent any other family from having to go through what the Crosier family has had to endure.

Specifically, Senate bill 85 addresses: instituting DNRs and similar physician’s orders; petitions to enjoin; resolution of parental disagreements; required disclosures of policies by medical facilities and physicians; and existing law concerning emergency health care. Simon’s Law goes a long way toward ensuring that medically fragile children are not discriminated against because of a diagnosis.”

Kansans for Life congratulates the expert presentation and management of debate by Rep. Whitmer and was edified at the variety of legislators speaking in defense of this bill. More tomorrow.

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Sheryl & Scott Crosier treasured their son, Simon

Sheryl & Scott Crosier lost their son, Simon, to a secret DNR placement

“Simon’s Law” is named for a medically fragile baby born with Trisomy 18 and apnea (breathing difficulty), who died when resuscitation was denied.

His devastated parents, Sheryl and Scott Crosier, only learned later that Simon’s hospital chart contained a DNR [Do Not Resuscitate] that was never discussed, much less permitted by them. They have mounted a grassroots crusade to alert parents and enact this law to protect parents’ rights.

Simon’s Law has the support of numerous pro-life medical groups and professionals, as well as other families who discovered (after the fact) that they also lost a child to a secretly-placed DNR. (see here)

Unfortunately, the medical climate is not tilted in the Crosiers’ favor. A survey of pediatricians last year found that up to 73% of them would issue DNRs without parental permission to children with severe, life-limiting conditions.

Sheryl was recently contacted by a Texas mom with the disturbing account that her 18-month-old son went to the hospital with RSV (a rather common illness) and the hospital tried to place a DNR in the toddler’s chart! The child had no other medical problem or condition but the RSV.

Simon’s Law will insure that DNRs will not be issued unilaterally by physicians and hospitals. All parents need this law–and not only those whose children might be medically discriminated against as lacking “quality of life.”

Brenda Spurlock & Son Zach with Sheryl Crosier

Brenda & Zach Spurlock with Sheryl Crosier(r) support Simon’s Law

KANSAS TESTIMONY
The following is the story of a Kansas mom, with special needs children, who came to testify in favor of Simon’s Law.

Seven and a half years ago, a medically fragile baby boy, Zachariah, was born in a Kansas hospital.

He lacked a significant portion of his skull, and a portion of his brain had developed into a separate sack attached to the back of his head.

Due to those challenges, his hospital chart contained a do-not-resuscitate order (DNR).

A few days after his birth, Zach suffered a long period of apnea and because of the DNR, he was removed from monitors, wrapped in a blanket, and handed to his biological mother to die.

Several minutes into the episode, baby Zach self-resuscitated. At that point his young parents asked medical personnel to do all they could for him.

Zach was alive, but needed to remain hospitalized. His unmarried mom had been matched by the perinatal experts at Alexandra’s House in Kansas City with a “mentor,” Brenda Spurlock, to support her during the pregnancy and afterwards.

Brenda had experience navigating a complicated NICU situation as her own daughter, Tatum, had also been born with a sac bulging from the back of her head. In addition, Tatum had been given a “fatal” diagnosis of Trisomy 18, which included neurological and physiological defects.

As Zach approached one month of age, his birth mom felt increasingly unequipped to care for him. Brenda and her husband Jack adopted Zach, welcoming him into their family of seven children.

Zach & Tatum Spurlock

Zach & Tatum Spurlock

CHILDREN EXCEED DIRE DIAGNOSES
Brenda Spurlock came to the Kansas Capitol Feb.16th to testify in support of Simon’s Law. She told the Senate Federal & State Affairs Committee:

     “We were warned Zach’s life would be very short. In fact, we were told he would likely not live out the month and that the best case scenario was a 3-5 year life span, fraught with life threatening seizures and bouts of pneumonia. We were also warned he would exist in a semi-vegetative state.

Yet he has never suffered a single seizure, nor has he ever experienced a bout of pneumonia. 

The portion of his brain that was removed was thought to contain his visual cortex and we were told he would be blind, but he sees! 

He has cerebral palsy, autism, profound global delays, and hemiplegia on the right side of his body. But he is a delight. He does not know a bad day, only a bad moment, and then he puts that award winning smile back on his face and marches on! 

Our daughter, Tatum, has had full genetic testing and her particular chromosomal tripling has never before been documented or journaled. Her life was judged by an unknown…and they were wrong! Tatum has far surpassed any of the prenatal and postnatal prognoses that were given to us, and on February 10 she celebrated her 9th birthday.

When we adopted Zach, we removed the DNR that had been placed in his medical records. 

I think every parent of a medically-fragile child should be aware of the choice to sign a DNR for their child, and I would hope that choice could be offered tactfully. But I stand firmly against medical professionals making a life choice for an infant or child based on a prenatal diagnosis, or set of tests.”

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